Advance Care Planning in the Hospital: Are Palliative Care Doctors Doing Enough?

Eric : Welcome to the GeriPal podcast. This is Eric Widera.

Alex : This is Alex Smith.

Eric : Alex, who is our guest today?

Alex : Today, I always say we have a special guest. But we have an extra special guest today. We have Kara Bischoff, who’s from UCSF, who’s Assistant Professor. She’s in the Department of Hospital Medicine. She’s a palliative care clinician and she mostly does outpatient palliative care now. And she published a paper in JAMA Internal Medicine that we’re gonna talk about today.

Eric : Great. Looking forward to it. We always ask our guests if they have a song for Alex to sing.

Kara : Well, sure. How about Landslide by Fleetwood Mac.

Alex : Great choice. The lyrics to this song are actually very GeriPal as I discovered learning this song last night. You’re gonna sing with me, right?

Kara : I sure am, Alex.

Alex : All right. Let’s go.

Kara : Here goes nothing. [Singing]

Eric : Maybe at the end, you both can do a little duet of that song.

Alex : That was a duet.

Eric : More of a duet.

Alex : More of the song.

Eric : More duet.

Alex : More song, yeah. You have to go listen to the end of the podcast to hear the rest of the song.

Eric : Yeah, just like more cowbell.

Kara : That’s motivation.

Alex : More cowbell. That’s what we need. We need Eric to play cowbell on these things.

Eric : Ok I will bring a cowbell.

Alex : Next time, cowbell.

Kara : Amazing. When do I get invited back for the cowbell?

Eric : So a paper in JAMA IM. Tell us about this.

Kara : Yeah, we’re very excited for the opportunity. This is basically coming out of the PCQN team, which is myself and my colleague, Steve Pantilat.

Eric : What does PCQN stand for?

Kara : Sure. The PCQN is the Palliative Care Quality Network. In short, this is a national registry in palliative care. And it’s one of three in our country where palliative care consult teams, in this case we’re reporting on inpatient consult teams, are part of this registry and collect data on patients they see for inpatient palliative care consultations.

Alex : This is like in the course of routine practice, they would be collecting data on their patients.

Kara : Exactly. Yeah, during our study period, we had 78 inpatient palliative care teams who are all collecting data on each of the patients that they saw.

Alex : And where were these teams?

Kara : The teams were 11 different states throughout the country, actually many in California because the network did start here in California. And they’re at a range, a really diverse range, of hospitals. Some small community hospitals, some public safety net hospitals, some large academic medical centers. It’s quite a diverse group.

Alex : And it’s interesting, this kind of research, it’s not like you had people sign consent forms and do this sort of thing. It sort of integrated into practice itself as part of a … Is this part of quality improvement?

Kara : Yeah, exactly. And one-

Alex : Would that be the Q?

Kara : It sure was. You gotta have a Q and a P and a C somewhere in there. So absolutely, I think one nice thing about this data set is it allows you to take a glimpse at real world clinical practice rather than the practice that occurs in a study setting or even our own documentation practices.

Alex : That’s great. So these are people that do inpatient palliative care. And are these mostly academic centers? Are these community? What are we talking about?

Kara : The majority are actually small community hospitals. Although, there are a number of academic medical centers and public hospitals that participate.

Alex : So tell us … What were you studying here using this PCQN?

Kara : Sure. In short, we were trying to look at the advance care planning that’s happening real world, currently for our inpatient palliative care team. So which patients have advance care planning needs, which patients are consulted for palliative care for their advance care planning needs, what do the palliative care teams do regarding advance care planning, and what are the clinical outcomes that result.

Alex : This is kind of like what’s going on in the real world with palliative care teams. Who are they seeing? Why are they seeing them? What are they doing?

Kara : That’s right.

Alex : That’s great. What an interesting study.

Eric : What did you find?

Kara : Sure. So amongst the 73,145 consultations that were-

Alex : Wait, wait. Can we just pause there? That’s a lot of consultations.

Eric : 73,000.

Kara : Absolutely. And maybe I should give a shout out to all of our members and great appreciation for their assistance collecting this data so that we could really understand this with a lot of power.

Eric : Ok so 73,000 consultations. What were they for? What are people being consulted for?

Kara : Yeah. So actually the majority of palliative care consults amongst the teams in the network were for advance care planning; 72% of the consults were requested for that amongst other reasons.

Eric : Do you have an idea what the other reasons were?

Kara : Yeah, absolutely. So in about half of the consults who were for advance care planning, that was the only reason. But in 46% of those consults for advance care planning, there were also additional reasons for the consult, such as a referral to hospice in 37% of cases, pain management in 30% of cases, other symptom management in 28% of cases.

Eric : What about the consult question we get, which is, “We don’t really know what the consult question is, but we just need your help.” Is that a category?

Alex : Is there a box for that?

Kara : Yeah, so in those cases, the Palliative Care Quality Network teams are challenged to pick something.

Alex : They don’t have a cry for help box?

Kara : Not yet.

Eric : I don’t know what we want you to do, but we just want you involved.

Alex : It seems like advance care planning … So I guess advance care planning is a wide spectrum. Is that a big, big basket? Is there a way of unpacking that? What might go into advance care planning? When I think about it I think about goals of care conversations would fit in there. Think about like documentation of stuff would fit in there. Think about breaking bad news, prognosis discussions.

Kara : Yeah, all of that would in fact fit in this bucket that we call care planning. In fact, in the Palliative Care Quality Network database, we combined advance care planning and goals of care discussions into a combined data element that was care planning. In recognition for seriously ill inpatients, it’s often difficult for clinicians to consistently distinguish what is advance care planning and what is goals of care. There’s so many conversations that we have that could be defined with both terms. So we use this generic term, care planning, to encompass discussions about people’s values, hopes, worries, wishes, and then also their opinions about specific decisions that they’re facing, including decisions such as code status and documenting all of those wishes in documents such as advance directives or POLST forms.

Eric : That’s a great point. So not all goals or care discussions are about future decisions. Some of them are decisions we’re making right now about their care. So it’s not all advance.

Kara : Definitely.

Alex : Yeah, so it’s not- Right. So some of these things are happening now. They’re sick now. They’re making decisions now. And some of these things are about the future. Is there a way of breaking that down? Did you look at those two categories separately?

Kara : We didn’t. In the Palliative Care Quality Network database, they used to be separated. But what we found early on during pilot phases with the database is that it was difficult for seriously ill inpatients to really distinguish them. For instance, a team might be consulted for an elderly woman with a new diagnosis of pancreatic cancer. They might start with advance care planning discussion, understanding values and priorities broadly, perhaps determining who the surrogate would be. But then that consultation could also evolve to include a conversation about specific treatments that that patient faces, which was more accurately categorized as goals of care. So that’s why we have that combined data element and we weren’t able to separate them out.

Alex : There’s so much blurring of the boundaries there. I can understand why it would be hard to separate out. And it rings true with like with my clinical practice here where most of the consults are for goals of care discussions or advance care planning. Do you think so, Eric?

Eric : Or specific symptoms, but they really want you to also talk to them about their goals. Or when you do talk about symptoms, the patient wants to talk about or you feel it’s important to address?

Kara : Yeah, one thing that that brings up for me is that in our study, we did find that even for these patients in whom the consults requested for care planning, we actually found that quite a number of patients, 46% of patients, had other pain or other symptoms at the time that they were seen by the palliative care team. And over 50% had psychosocial needs. 27% had spiritual needs. So certainly these “care planning consults” were very complex and often involved many other aspects of care.

Eric : Maybe taking a step back before we go more into the results, how do you know they had all these needs? So a consult happens, palliative care team sees the patient. And then do they enter this information in the database? Or is it pulled from the EMR?

Kara : Exactly. No, the teams directly enter that data into the database about what assessments they did and what needs they identified, as well as what they did to intervene upon those needs.

Alex : There must be some variation though between settings between hospitals. Like I remember in Boston when I was at the Brigham, most of the consults were for pain. In fact, the service was called the Pain and Palliative Care Team. So most of the consults were based on symptoms and then you gotta kind of get into the goals of care secondarily. So did you look at variation between these different sites?

Kara : We did, absolutely. And the teams in our network during the study period that we examined here, there was a broad range from 27% to 99% of consults were for advance care planning or goals of care. So you’re completely right. Some hospitals are doing almost exclusively these types of consults and in other hospitals, it’s the minority. So it’s really interesting in the Palliative Care Quality Network to be able to examine the range and the differences between teams.

Eric : So speaking of these consult teams, what were they comprised of?

Kara : Yeah, absolutely. So in terms of the consults for advance care planning, they occurred on average 4.7 days into the hospitalization. And that wasn’t actually different than the timing for other palliative care consults. The advance care planning consults involved doctors in 52% of cases. So just over half of these consults involved doctors. Social workers were involved in about 40% of these consults. Chaplains in 33%. Registered nurses in 37%. So you’ll notice that adds up to more than one because in some cases, multiple team members were involved. And patients were followed during these consults for care planning for a median of three days. And there’s an average of 1.4 family meetings per consultation.

Alex : So I would imagine most teams probably have a doctor or a nurse practitioner or registered nurse and some have a social worker, some have a chaplain. Something like that?

Kara : Correct.

Eric : Was it different for other consults? Do you have that data? What the team makeup looked like?

Kara : Yeah, the consults for pain management and other symptom management more frequently involved doctors or nurses. And the consults for psychosocial needs, spiritual distress not surprisingly involved social workers and chaplains respectively. But this was obviously a very common reason for consultation, so it sort of was right in the middle.

Alex : So did all of this care planning translate into new documentation?

Kara : Yeah. So we’re jumping into the results, but yes. You’re right. There was a lot of care planning that occurred. There were a lot of needs that were identified in these patients. There was a lot that teams did to try to address those needs. What we found is that teams very consistently identified surrogates for patients and very often addressed their preferences regarding life sustaining treatments, including code status. And frequently, they found a preference regarding life sustaining treatments that was different than what was previously documented before the consult. So though we weren’t able to measure all the nuance detail of exactly what was happening in those conversations, we think that there’s a lot happening to clarify patients’ wishes.

However, to answer your question, there wasn’t nearly as frequent that legal documents were completed, whether those be advance directive or physicians’ orders for life sustaining treatment forms to document those wishes.

Eric : When you say not as much, what numbers are we actually looking at here?

Kara : Sure, absolutely. So we looked at this a few different ways. Overall, an advance directive was completed for just 3.2% of patients.

Eric : Of all the 70,000 patients, 3% had an advance directive documented?

Kara : Completed by the palliative care team.

Eric : Could it have been completed by somebody else?

Kara : The Palliative Care Quality Network defines completion of advance directive as the work done by the palliative care team. So palliative care consult teams in the hospital are not doing advance directives very frequently.

Eric : Sometimes like on our consult service, we actually ask the team social worker, like not the palliative care team, but the primary team social worker to come back and fill out the advance directive, especially if it’s just around surrogate decision makers. That would not count, right?

Kara : Correct.

Alex : What about documentation in the medical record that we had this advance care planning conversation. This is the surrogate. The patient said that they would like this sort of treatment or these circumstances and DNR/DNI. Did that count?

Kara : No, that was happening very frequently. So that was reported in the Palliative Care Quality Network and it was happening very frequently. In fact, over 90% of patients had a surrogate documented. The vast majority had code status addressed. And quite a substantial proportion, so 31% more people indicated that they’d like to have a code status of DNR/DNI after the palliative care consult compared to before it. So certainly, there is a lot that was occurring in those conversations and being documented in the medical record.

Alex : It sounds like you’re suggesting that palliative care teams ought to be completing the legal paperwork for what reason? So that these decisions are transferred with the patient across settings if they leave the hospital?

Kara : Thanks for asking that way. I don’t think we have a pre-specified target that we think is the right answer for everybody. Rather, we wanted to highlight this so that folks can understand what palliative care teams are doing very consistently and what we’re not doing. But we highlighted in the discussion that there are many reasons why a palliative care consult team may not do an advance directive. There may be other people in the hospital who can complete that document. And there’s legal requirements, including notarization that may not be realistic to complete during an acute hospitalization. So I think there’s lots of reasons that that number is low and may be appropriate for it to be low.

I think the question about the ideal rate of POLST form completion is something that we’ve grappled with more. We still don’t have an answer here. But we do think that this is an important document that can help patients get care consistent with their wishes. And we think that probably the 12.3% rate that we found is too low.

Alex : Sorry. What was the 12.3%?

Kara : So in 12.3% of these patients overall, POLST form was completed during the course of the palliative care consultation.

Eric : And are these … So the PCQN, PCQN is more than California. But the POLST is only in some states.

Kara : That’s correct. So there are some teams in the Palliative Care Quality Network that don’t have a POLST in their state. We still include them in these analyses because we still think it represents a quality gap those patients still don’t have access to such a form. But you’re right that those eight or 10 patients are dragging down our average.

Alex : But not by much.

Eric : Out of 70,000.

Kara : Or eight or 10 teams.

Alex : Teams. Got it. But still, it’s an interesting question. Ought palliative care teams help patients … Are we missing … This could be a game-changing suggestion here. Palliative care teams, they seem like they’re the right people to have these conversations. They seem like they’re the right people to fill out these forms. And sure, there’s some practical barriers and notary things, absolutely ridiculous.

Eric : But you don’t need a notary for a POLST.

Alex : You don’t need a notary for a POLST. Should we routinely be completing POLSTs on all patients in states where it’s allowed?

Kara : I think that’s a great question. It’s a conversation we’ve had a lot within the Palliative Care Quality Network. And I think it’s been challenging for us to answer conclusively because many of us work in hospitals where we’re really trying to promote primary palliative care. And we think that our hospital medicine colleagues and our other colleagues that we work closely with have a lot of skills and a lot of interest in serving their patients and providing care consistent with their preference. So we don’t want to curtail their involvement in primary palliative care, including completing POLSTs. In fact, we wanna educate them and empower them to do that type of work themselves.

However, we also realize that even when I’ve made those recommendations to primary teams quite recently, it doesn’t always happen. And the conversation doesn’t always happen in a high quality way.

Eric : Especially, if we go in and have a goals of care discussion as far as the palliative care team and it’s clear to us that our recommendations are DNR and the patient agrees with that and maybe the patient brings it up, it seems like an opportune time to actually document that, instead of saying, “Great. And this other team of doctors are gonna rehash this entire conversation, probably in a very different way and may just say, ‘Do you wanna be DNR or full code?'”

Alex : Or worse, hand the pink sheet to the patient and say, “Hey, we heard you talked with the palliative care team. Can you fill this out? And we’ll come back and sign it.”

Eric : So it does seem like a place where we can actually do some quality improvement amongst our palliative care teams.

Kara : I think so.

Alex : It’s interesting. There’s an analogy here with we thought once we start having these goals of care conversations with patients as palliative care providers, then the residents and the primary teams are gonna lose these skills because they’re not having them. And I think the same concern applies here. We want to encourage them to be filling out the POLST forms. And at the same time, I’m starting to think there may be something here to say palliative care teams should be filling out POLST forms. And when they fill them out, they should say, “Hey, somebody from the primary team, come on, join us. See how we talk through this. See how we introduce the POLST.” Because there’s a tremendous amount, like we were just talking about, of poor quality conversations that lead up to completion of POLSTs or no conversation, where they just hand them the POLSTs and say, “I’ll come back and sign this tomorrow.”

Kara : That’s right. I think that would be really ideal if we can have these conversations together with primary teams in order to demonstrate how we’re doing it and teach them and empower them to do more of it. I also think that for our teams in the Palliative Care Quality Network, as we’ve looked at this data and then moved forward from it into a multi-site quality improvement project, we’ve been really realizing that you can’t just say, “Go hospital medicine. Go primary teams. Let’s do more of these POLST forms.” They’re gonna need to have some support to understand how to have these conversations. And it is helpful to have some quality control and really examine how they’re having the conversations in order to tailor the ongoing education. Because it can be an intimidating form. And you’re completely right, you can get a different outcome depending on how that conversation occurs.

Alex : That’s really interesting. So tell us what else you think is really key to take away from your study.

Kara : Yeah, absolutely. And I think just taking that data bout POLST forms a little further. We did look at patients in whom they had expressed a preference to limit life sustaining intervention. So they had expressed a preference to be either DNR/DNI or partial code and who survived a hospital discharge and were followed by the palliative care team until the end of the hospitalization. And there’s still advance directives completed for just 4.3% of patients and POLST forms were 29% of patients. And then we looked at just the-

Eric : That is actually really interesting that the advance directives are still incredibly low, but people are seeing utility of POLST over the advance directive.

Kara : That’s right. Definitely.

Alex : So POLST is superseding the advance directive in some ways.

Eric : Or these teams are finding them more useful or easier to complete.

Alex : And maybe because the don’t need a notary. And it’s a binding order as opposed to general set of directives.

Kara : I think for all those reasons. And then even amongst patients who are discharged to an extended care facility. So this is a SNF for instance or a long-term acute care facility where POLST forms are actually legally required in many states, including California. A POLST form was-

Eric : Not legally required. Nobody can force somebody to sign a POLST form, right?

Kara : Or maybe it’s a requirement of the skilled nursing facility to offer it.

Eric : Bring it up and offer it.

Kara : Thank you for clarifying that. But still POLST forms are completed for just 31% of those patients who had a preference to limit their life sustaining treatments.

Eric : So individuals who were let’s say DNR, of those individuals, only a third had a POLST form going to a skilled nursing facility.

Kara : Yeah. And so those patients are gonna show up at the skilled nursing facility and they’re going to be provided a POLST as part of their admission process. And it’s just a question of whether the conversation is gonna happen really well in that setting or whether it would have been better for it to occur in the hospital after the conversation occurred, during which it was recognized that they wanted to limit their life sustaining treatments.

Alex : This is really interesting stuff. So here’s another question. What if some of our listeners out there are really jazzed about this idea of the Palliative Care Quality Network and wanna join? Is that a possibility?

Kara : Absolutely. So yeah, we are a growing network and we onboard teams every week. I think we’re now up to about 88 teams in our network and our geographic area is spreading. We also are working really closely with our other sister of registries in the field. Namely, QDACT and CAPSI. Sorry for the alphabet soup. But all of us are working together to try to get more specialty palliative care teams on board collecting data through a quality improvement registry so that we can analyze with greater and greater power what are we doing. How is our practice varying? And what can we learn from each other to improve?

Alex : That’s terrific.

Eric : And do you have any practical suggestions for teams wanting to improve let’s say their POLST completions or advance directive completions?

Kara : Yeah. That’s a great question. I think some of the pearls that we’ve gained from our quality improvement project so far is that it’s really helpful to have your data very visibly apparent. So to track your data and to look at it and to stay on top of it. And it’s quite motivating actually to look at how your data compares to other similar teams. It’s also really helpful to have a champion for a quality improvement project who really owns the project, keeps beating the drum and keeping it at the top of people’s awareness. And then trying to change the system to make it a little easier to do the right thing more often.

So whether that’s making sure that there’s POLST forms in the palliative care a rounding room or on all of the floors, making it easy and consistent for POLST forms to be scanned into medical record and posted in the place where people can find them. Imagine that. And coming up with processes to make sure that once POLST forms are completed, they’re actually sent with patients and patients get the education about how to use them. And family members get the education about how to use them into direct future care. So I think making the system smarter and more consistent to make it easier to do the right thing.

Eric : What’s next as far as research for you?

Kara : Yeah, that’s a great question. I think in the Palliative Care Quality Network, we really are interested in doing a deeper dive into our high-performing teams, the teams that do this and other care practices very consistently and well. And try to really do more direct observation and qualitative research to try to understand what is leading them to perform well and what could we learn from that, that could be disseminated to other teams in the network and beyond. I think also we recognize that the data collected here and reported here is necessarily very concise because we had to keep this data set to our 23 core items that are feasible for front line clinicians to collect in the course of their usual care.

But I think there’s a lot more to be understood about exactly what was occurring during these consultations, how much of the time were we exploring values, hopes, fears, wishes, preferred place of death, et cetera. There’s so much more to these advance care planning conversations that we weren’t able to capture in this concise data set.

Alex : It’s really interesting. This is that question that Diane Meier often asks about. What’s in the palliative care syringe? And this is an early glimpse because as you say, a lot of people participating. But you can only ask so much. These are clinicians. This isn’t a research study. These aren’t researchers. These are people on the front lines doing the work who fill out these forms, so you can only get so much. So you can see the color of what’s in the syringe, but you can’t relate too much more than that. A sort of in person look would be really interesting to find out more.

And in addition to looking at the high-performing teams, it might be interesting to look at the low-performing teams as well to see what’s happening there as a contrast. We look forward to more.

Kara : Thank you so much for the opportunity.

Eric : So thanks for joining us. Maybe we can end with a little bit more of Landslide.

Alex : Thank you.

[singing]

by: Annette Rodriguez